Family Blog

Brand a Bus in Oxford - We need your vote

UncategorizedNovember 30, 2018

It Is Your Birthday Dear Skye, 10 Today!

UncategorizedNovember 05, 2018

Big Brother Promotion

UncategorizedOctober 17, 2018

'Sponsor a Cog' for our LOOMSTALLATION at The Oxford Children's Hospital

UncategorizedOctober 09, 2018

Emotionally Naked

UncategorizedAugust 29, 2018

It is almost impossible to put into words how Andrew and I feel on days like today. We re-live every hour of the last day of darling Skye's life, from the moment he woke up and said "I am feeling a bit tired today," to him insisting on sending Granny to buy his little brother a pink guitar.

The medical trauma of the day was very hard, every fibre in our bodies wanting to keep shaking him awake and insisting him stay with us but knowing being the ultimate parent was to stay composed, calm and confident for Skye's sake.

Skye was so aware of everything that was happening to him and it was terrifying to be the people responsible for keeping him from being scared.

Every day is hard but we have learnt to hide how broken we are in order to operate and carry out our duties. On days like today however, I am emotionally naked. I don't want to be the strong, accepting and inspiring face of the Charity, I want to curl up in a ball and remember how it felt to hold Skye's little hand in mine as I sang 'Never play cards with a Cheetah' and think of nothing else.

I am lucky, the day is mine and I can be who I need to be. For Andrew however, he has to find the strength to start the new academic school year, to welcome new teaching staff, to stay in control, to listen intently to other peoples concerns and to the best job he can for the sake of the pupils he is responsible for. I know he will do it because he cares so deeply about all children and his job is his vocation. I admire and love him with all my heart.

He left this picture by the bed before he left for work today. It is the most exquisite illustration of how we feel and we would like to visit Switzerland to see it sometime.

Art is powerful.

Why We Do What We Do

UncategorizedMay 08, 2018

Being a Mother of a Child who Died - on Mother's Day

UncategorizedMarch 10, 2018

Christmas Without The Pudding Lighter

UncategorizedDecember 20, 2017

Easy Fundraising - A 'How to' Guide made by The Hall Boys!

UncategorizedNovember 23, 2017

Thinking of you on your 9th Birthday Skye!

UncategorizedNovember 05, 2017

Don't Judge the Bereaved Mother - Poem

UncategorizedOctober 20, 2017

Today, my heart was bleeding for a wonderful mother and father who had to attend the funeral of their son. I have never been in so much awe of parents who have been such a constant loving framework and source of entertainment for their dear boy.

We met on the ward four years ago and Jesse became friends with this little boy as they were both two years old and shared the same immense pleasure for the big daily visit off the ward to visit the 'whirly whirly' charity box! When restricted to the confines of the ward, Jesse recorded a little video to show his pal.

I remember being able to hide my emotions from Skye so as not to worry him but clearly couldn't shield Jesse from my pain and looking back at this video, I see how much he picked up on at such a young age. He is still my beacon of light and I am so very proud of, and grateful for him. I have realised that it would be whole heartedly unfair to subject him to the anguish and pain I feel inside every day when I wake up and so, take a deep breath, (some days very deep,) and smile to the world.

What I witnessed today was so inspiring; a mother who was being forced to say goodbye to her only child and although you could see in her eyes her heart was shattered, she was able to smile for the sake of the guests at the funeral and think about their needs. It is no wonder that her little boy was the kindest, most thoughtful chap I have ever had the privilege to meet.

We were asked today to keep love and hope in our hearts, it therefore only feels right to share this message as far and wide as possible in his memory.

Driving home, I also decided to share a poem I carry round in my purse every day. This is for any mum out there who has a piece of her soul elsewhere but continues with a smile for the sake of others.

BBC NEWS - BREAKTHROUGH IN TREATING CHILDHOOD BRAIN TUMOURS

UncategorizedSeptember 19, 2017

"We would like to thank all those who have been inspired and motivated by Skye and who have helped us get to this point. We truly couldn't have done it without you." Sally & Andrew

Gemma Llargués Sistac working at Northern Institute for Cancer Research

Read on...

Recent new discoveries by the paediatric brain tumour research group at the Northern Institute for Cancer Research led by Prof. Steve Clifford, have been able to sub divide the most common type of childhood brain tumour and therefore provide more bespoke and in some cases, gentler treatments.

Brain tumours are the cancer responsible for most young lives lost.

Prof. Steve Clifford, said that in the future, patients might not need to go through such aggressive treatment. "This new discovery allows us to undertake studies to see how we could use these insights to personalise treatments according to the biological features of each patient's tumour. We are inspired by Skye’s story and the fundraising efforts of Blue Skye Thinking."

Blue Skye Thinking funds Gemma Llargués Sistac (who has a degree in genetics), to assist Prof. Steve Clifford. The Paediatric Brain Tumour Research Group at the Northern Institute for Cancer Research led by Prof. Clifford, Dr. Williamson and Prof. Bailey, comprises over 20 scientists and clinicians work towards a better understanding of the biological basis of nervous system tumours, and translating this knowledge into new and better therapeutic strategies.

Gemma Llargués Sistac said "Blue Skye Thinking is a Charity that understands the struggle that research groups encounter when trying to establish new ways to treat childhood cancer. Supporting research as the charity does, brings an opportunity to develop new therapies to improve survival rates of children with brain tumours, which can be translated into better quality of life and reduced toxicities related to therapy in surviving patients."

Miss Sistac is following up targets that were implicated by the study and reported in Lancet Oncology, to translate these discoveries into frontline treatment. There is a long road for this breakthrough to benefit children on the ward.

One of Skye's Consultants, Dr Mark Gaze, Consultant Clinical Oncologist at Great Ormond Street Hospital (GOSH) & University College Hospital (UCH) Tweeted, "Some good news here - but the pipeline is a long one. Clinical research to validate theoretical advances takes time."

It also takes funding which is why Blue Skye Thinking is determined to fight on to reach our next target.

How Does A Moment Last Forever

UncategorizedAugust 29, 2017

Welcome to the World Baby Beau

UncategorizedJuly 03, 2017

We are thrilled to announce the new addition to the Hall Family - Beau Elliot, born Saturday 24th June 6.29am weighing an impressive 9lb 6oz!

We are all smitten with him and our only wish would be that his big brother could be here to give him a big cuddle.

Mummy has been snap happy as she repeats her mantra "You never get these times back".

First stop, visiting Skye's grave where the boys enjoyed a 'fidget spinner' hunt and gave Beau a BST babygrow!

Could you be this brave?

UncategorizedJune 12, 2017

Oxfordshire Business Awards and BBC One Coverage!

UncategorizedMay 05, 2017

Feeling rather relieved today as we are so close to our final fundraising target and the amazing accolade of becoming finalists for the prestigious Oxford Business Awards might just help us hit our total! All we need now is for local businesses to recognise the incredible effort and massive strides Blue Skye Thinking is making in the world of Children's Cancer.

We have not been placed as finalists in one category but TWO!!

Many congratulations to Special Effect and Sobell House, great to see our name amongst such wonderful organisations!

It doesn't stop there...

Tune into BBC One at 4.30pm today to see much loved BBC presenter and antiques expert Jonty Hearnden, buy and sell rather interesting items on 'Put Your Money Where Your Mouth Is' raising funds and giving a plug for his chosen Charity - guess who??? Watch again on BBC iPlayer

If anyone is considering doing a Summer Ball or big event where a charity auction would fit in well, I can highly recommend Jonty. He is helpful, honest and a really good sport when it comes to auctions. He can also provide his own bought in art such as PIcasso and Dali limited editions which always bring in a profit -providing you run the event for us of course!!

Must go as have just been scammed for a double buggy purchase I have just made to accommodate our new arrival - paid in full and it never arrived. They have apparently sold the second hand buggy several times over - why are some people so dishonest when the gooduns like Skye receive such a terrible fate - I just don't get the world sometimes....

Mother's Day

UncategorizedMarch 26, 2017

It would seem fitting on this Mothers’ Day, to share with you the lovely news that we are expecting our fourth child, due in June this year. We consider ourselves very lucky to be able to treasure and nurture a new life and very much hope that Skye’s vision and values will rub off on his siblings, despite not being able to be the amazing big brother he would have continued to be, had he lived.

Jesse is very excited and has been telling Flynn that he will now not only have two big brothers but also a little brother or sister to play with too. Another bitter-sweet day ahead, desperately wishing my first born was able to bounce into the bedroom with a cup of water and burnt toast with his little brothers. Thankful too that I did get a cup of water and burnt toast! Jesse is the most thoughtful chap - he not only made a card from himself but also 'helped' Flynn and Skye make one.

I have been giving a great deal of thought lately to women so desperate to experience the wonder of becoming a mother and to be allowed the honour and experience of unconditional love towards a baby of their own. I too would like to pay tribute today, to an amazing lady and who was also Skye’s Paediatric Oncology Consultant, Dr Sheila Lane, who is the programme director and clinical lead of Oxfordshire’sFuture Fertility Trust.

Did you know that ten young people under the age of 25 are diagnosed with cancer every day. Eight will be cured; one of these eight will become infertile as a result of their treatment and will not be able to have their own children. Being told that the treatment required to eradicate their cancer could cause infertility, can be overwhelming and I can only imagine the sadness that news like that can bring to one’s heart.

The Future Fertility Trust, was set up by a team of doctors, researchers, and tissue bank specialists, who offer a comprehensive ovarian and testicular tissue cryopreservation service for the young. They see and advise patients from the earliest point of diagnosis for a wide range of conditions, and give advice on appropriate fertility preservation options before, during and after chemotherapy and radiotherapy treatment.

They offer hope, and THAT, is a wonderful gift. If you want to learn more about their fascinating and quite wonderful work, please follow this link: http://www.futurefertilitytrustuk.org

Here's to HOPE this Mother's Day xxx

What To Say And What Not To Say To The Grieving Parent

UncategorizedJanuary 16, 2017

We strive to be compassionate and have the urge to help the broken hearted. Why is it then, that so many comments feel more like a punch in the stomach rather than their intended source of comfort?

I used to be every bit the person I now try to avoid, desperately trying to find a ‘positive’ in any given situation. Society is not equipped to know what to do and say in times of utter despair and grief. For the most part we hide it and take the ‘stiff upper lip’ approach. Why?

Grief can flummox the most eloquent – even having lost a child myself, I still sometimes struggle to know what to say to other parents who are facing life without their child. Don’t let your own personal discomfort keep you at arms length. It is so incredibly isolating and while we may need to be withdrawn and physically alone, the only thing worse than suffering, is suffering without understanding or acknowledgement. Don’t give up on us however hard we make it. We do need your love and support.

A beautiful boy we had the pleasure of getting to know while we were on the ward with Skye, died last week. Even now, I realise that there are simply so few words or actions that can offer comfort. My gift to his family is sharing the following advice for others who they may know, so that they may feel surrounded by love and not to feel even more pain by unintended but hurtful comments.

1. Don’t’ say I CAN’T IMAGINE WHAT YOU ARE GOING THOUGH – Try!!!! Real empathy is the best thing you can offer someone who is hurting because when you really empathise, you are much more likely to say the right thing!

TRY: Keeping empathy in your heart and mind at all times. It is the key to everything that might come out of your mouth!

2. Don’t ever say AT LEAST or BE THANKFUL. "At least he is not suffering any more... at least you have another child." Before you tell a grieving parent to be grateful, ask yourself which of your children you could live without?

TRY INSTEAD: "I miss him too, I remember when…."

3. Don’t say IT WILL GET BETTER IN TIME. Don’t assume we are grieving for our own loss. The child's loss is the greatest and no amount of time will give them the life they should have had back.

TRY: "What do you need most TODAY?" "How are you doing TODAY?"

4. Don’t be SCARED OF SEEING US UPSET. By mentioning their name, you are not reminding us they died, we did not forget! We desperately and fiercely want them to continue to have an effect on those who knew them, and that they always have a place in everyone’s heart and mind just as the living do – is that too much to ask?!

TRY: Sharing a memory you hold dear. Not just once but for years to come. We can’t make new ones like you can, but you can bet when you share one of your child, it will trigger a memory of our own. Be one step ahead of us and be the first to share your own memory of our child.

5. Don’t force us to MOVE ON. You may think willing us or telling us it is time to do this will somehow make that happen. Although this may make you feel better to see us moving on, just as a mother of a 2-3month old child, after all the attention and support has subsided and they are left with the reality of daily life, we are acutely aware that life for others around us has of course moved on, but comments like that help no one other than the person saying them. If you think no one says this, I can’t tell you the number of parents I know, that have heard those very words. This is the surest way of making the person you are wanting to help, feel like you have twisted a knife in their already broken heart and you are likely to lose all faith they had in you forever. Never, never say it! Ever! We have lost the most precious person in our entire lives. We have already had to ‘let go’ of someone we would have given our own lives to keep, so the only thing we have left are their memories and our endless love for them. Please don’t ask us to move on and let that go too.

TRY: "The love you have for your child now, will be as strong forever. I would like to be here for you every breath you have to take separated from your child, if you will let me?"

6. Don’t turn New Year wishes into POSITIVE NEW BEGINNINGS. This time of year is already super tough but to receive positive sentiments for the new year such as “We hope 2017 will be a much happier one”. It is just cruel.

TRY: "I am thankful for you and your beautiful child who will stay in my heart throughout 2017 and the years after. Wishing you much strength for the year ahead. You are loved.”

7. Don’t ASSUME PEOPLE SHARE YOUR BELIEFS. By all means share your thoughts on faith if asked, or at the very least, acknowledge that what you are about to say is your own personal belief. The blanket “HE/SHE is in a better place" is only a comfort if you share those beliefs, otherwise it can be interpreted as ‘their child was not best off with them'.

8. YOU NEED TO PULL YOURSELF TOGETHER AND BE THERE FOR YOUR OTHER CHILDREN. If someone you knew had just had major heart surgery, you would be telling that person to take it easy and focus on themselves first. Grief is like having major heart surgery. Don’t make a grieving person feel any worse by suggesting they are neglecting their children because they are grief stricken. They probably feel guilty enough. Encourage us to help ourselves first, so we can then be in a better position to help others we care about.

9. Don’t keep things SUPERFICIAL. It may seem like you are doing us a favour, what we really need is someone who is willing to let us be real and to have someone who isn’t afraid of talking about the tough stuff. Take your lead from them. By all means offer a ‘lighter’ evening if that is what is required but don’t push for that too hard. Real healing comes from some of the heavier conversations.

10. IS THERE ANYTHING I CAN DO? Grief consumes the immediate and controls the mind for future planning. Better to offer specific help.

TRY: “I am going to the supermarket, can I pick up milk, bread?" "Can X come and play this Tuesday morning?" "Do you need help with that project?" "I could do… It would be no bother."

11. THEY WOULDN'T WANT YOU TO BE SAD. When you love deeply, you grieve deeply. We need to be sad; we can’t not be for someone else’s sake. Using our dead children to put even more pressure on us, is a platitude which doesn’t work.

12. EVERYTHING HAPPENS FOR A REASON. I can’t believe I am even having to add this onto the list! No it doesn’t! Not everything in life is logical. Children should NEVER die before their parents.

TRY "Your child’s death is a tragic, terrible loss to the world, it breaks my heart, I am sorry, there are no words!"

Next time you speak to someone who is going through utter hell, instead of trying to make yourself feel better by showering them with positivity, stop, put yourself in their shoes, acknowledge how hard things are and NEVER forget their beautiful child. You are much more likely to provide that tiny fraction of comfort you were hoping for.

Credits

Thank you to Jeannie Page (photo), Christy Heitger-Ewing and mums from Kamran's ward who have travelled the same road and been subject to similar comments. Your help with this has been invaluable.

Navigating Christmas after the Loss of a Child

UncategorizedDecember 11, 2016

Christmas means many things to many people these days! New, well-marketed traditions are here to stay whether we want them to or not, but it is up to us as individuals to continue to live our lives how we want to, true to our personal life values rather than feeling pressured into keeping up with the Jones’.

One of the most wonderful aspects of Christmas, is that it‘s often a time when families make the effort to come together. Needless to say, when someone you love is then absent, for whatever reason, the stark reality hits you during this time of ‘togetherness’ like a knife through the heart.

It feels like there is no escape for us, music in supermarkets pound out “All I want for Christmas is You”, School Nativity plays are cast with one less Shepherd, the empty stocking lies in a box, never again to be hung out for Father Christmas. It has, for us, now become a time of year, where we have to pull out all the stops to create a magical and hopeful environment for Jesse and Flynn, but that does mean supressing our building emotions of desperation and loss. I can only imagine that this must be the same for a great number of other people who are not ‘living the dream’ at Christmas time and our hearts go out to you. I recently saw two Christmas T-shirts in shop windows, one which said “I Want it All”, and the other “Do Nothing this Christmas”. These are certainly not the values we wish Jesse and Flynn to grow up with / nor the ones Skye held.

As a family, we have our goals, and we cannot lose focus until they are reached, but we would never want our friends and supporters to feel we were pressurising anyone into our cause. I say this on the back of a school ground conversation I had with a mum the other week where she was exasperated by "yet another charity day", and the hassle of having to find a Children in Need outfit and to donate £1.

Jesse - age 5 - Elizabeth's Footprints Children's Intensive Care Unit

Skye - age 4 - Children in Need

I don’t suppose I was quite the sympathetic ear she had hoped for, as I have always felt it incredibly important for schools to promote a ‘caring for others’ attitude that we wish our own children to adopt, and I for one feel glad when a fun event can be coupled with doing some practical good! The money for bringing about change comes from these very type of events. The amount of luxury purchases made at Christmas just highlights how we can all find a bit of spare change if we are motivated to do so.

What Andrew and I have discovered over the past two years is that fundraising is a tough gig! It takes an inordinate amount of energy, courage and bloody mindedness to keep things afloat and we would like to take this opportunity to thank each and everyone one of you who have stood by us in one way or another most sincerely.

Happy Families - Skye and his cousin - Christmas 2011

We very much hope that passionately sharing our new found knowledge, of an area which has been neglected for so long, sharing Skye’s humour, good natured spirit, and will to help other children, is what drives you to continue to walk with us, especially at this difficult time.

Please don't ever stop thinking and talking about Skye, we love seeing his name included in Christmas cards. It means so much!

We would like to share with you a video which we have held back until now as we were worried some may find it distasteful but it was a very true to life snapshot of how we all tried so hard as a family to keep silliness in our hearts and minds in order to enable Skye to giggle and laugh just as a child should do. We hope it makes you laugh too this Christmas….

First Day of School

UncategorizedOctober 10, 2016

My heart goes out this time of year, to all the mums having to hand over their precious children into the care of ‘big school’. We have all summer together, willing the date to get nearer, to be able to field some of the “why” questions, desperate for more time on our hands without having to be the soul provider of entertainment, knowing they will love making new friendships, devour new information and begin their journey of independence and growth. Why then is it so incredibly hard when that day finally arrives?

Of course there are the obvious worries about how our children will cope; Will they remember where the toilets are in time? Will they have a happy day and meet a nice friend? Will they like the cooked dinner and eat something? Will they be brave enough to speak up if they need something? Add to that a great big dollop of selfish feelings about how we feel. Oh come on, its true. I hate this defining moment when you know your child is growing independent and will ultimately leave you to discover a life for themselves and of course that is what I will encourage every step of the way but it doesn’t make it less hard.

I feel I owe Jesse a lot. What he has had to witness and cope with for over half his life now has not been the carefree, innocent, happy and exciting world I wanted to create for him. One day he was happily playing with his big brother in the garden, the next, a life separated from us all having to live with Granny much of the time and hospital visits ending with his inevitable howls echoing the corridors when it was time for him to leave. Jesse has been deprived the social life he craves. He is desperate to make friends with children his own age and I have made it my number one priority to make sure he has my full support.

I have been very proud of myself and tried to blend in with the school parents, performing my best 'jolly' persona to date. "Smile", I tell myself every few steps.

Walking to school each day with Jesse (who is still somewhat reluctant), I get flashes of Skye constantly. Memories of his excited face when we bought his new school shoes and writing his name in his brand new book bag all come flooding back. Seeing the older children running to school with their older siblings, knowing that Skye should be with us, holding Jesse’s hand or bumping him into hedges and playing tag on the way in. My heart is so heavy (smile). Jesse feels it too and while I believe he enjoys making new friends and comes running out at the end of the day with a big grin on his face, each morning however he gets very worked up at the thought of leaving us for a whole day. He said he wished Skye could be at the school with him. Skye, (with my help) has been writing Jesse little notes and leaving them in Jesse's shorts pocket for him to read at school to make him feel less alone. Please tell me it gets easier?!

To finish, I would love to share this snap of Skye on his first day at school where we visited his class just for a short time. He boldly stuck up his hand, insisted I march him to the front of the class where he wanted to do demonstrate the purpose of his school swimming hat. “It goes on like this,” he said “and it keeps your hair from getting wet in the pool, well, it would if you had any which I don’t, ha, ha.” I will never forget it – what an amazing attitude.

Jesse has already seemed to have captured the hearts of many of the girls in the class so he must have picked up a few tricks from his big bro!!

A truthful account of our journey as a family
during and after the loss of our dear son, Skye.

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Family Blog

A truthful account of our journey as a family during and after the loss of our dear son, Skye.

Family Blog

Countdown for cog sponsors…

For more information please visit www.loomstallation.com

Read on...

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A truthful account of our journey as a family
during and after the loss of our dear son, Skye.